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Living with MdDS

I was thinking about some of my struggles (big and small) in my day-to-day MdDS life and started writing about the things that I’m hoping to have back in my life one day soon.

I am hoping for the day…

When I can shower without having one hand on the wall. When I can walk without feeling like I’m on a rope suspension bridge. When I can go into my closet or bathroom and not feel like the walls are closing in. When I can concentrate for more than a few minutes. When I can sit on a barstool. When I will stop asking people, “Am I moving?” When I don’t have to pick a bedspread based on the pattern (or lack thereof). When I can walk and not be afraid of falling. When I can stop agonizing over the next test, doctor, treatment or medicine to consider. When I can be totally present during every conversation. When I can meet up with friends and actually feel fine (and not just pretend I’m fine). When the best part of my day isn’t sitting in a car. When I don’t feel the need to think about what kind of day I’ll have tomorrow. When I can go places and not think about the lighting. When I can walk without touching walls, counters, and the backs of chairs. When I’m not rocked to sleep at night (and rocked awake in the morning). When the last time I didn’t feel like I was on a boat was when I was actually on a boat. When I don’t cry at least once. When I can be me again – or maybe even a better version of me.

I hope we all have this day soon.

After sharing this list within the MdDS Facebook group, a few other people wrote about their frustrations with certain symptoms. A trip to the grocery store can be very challenging – the lights, people, colors, patterns, narrow aisles. It all combines to make a very unpleasant outing (not that we particularly enjoyed it pre-MdDS). This can be the same for large events with crowds, bright lights and changes in lighting.

Other people shared about how the unpredictability of their symptoms impacts social outings and planning events. To those with a loved one with MdDS, please know that if we cancel on something, it’s not because we don’t want to be there or see you. We just want to make sure we can fully participate, feel okay and relaxed, and not take away from anyone else having a good time.

In addition to the rocking sensation and brain fuzziness, many of us with MdDS also struggle with headaches, ear/head pressure, eye tiredness, light sensitivity and fatigue. It’s sometimes difficult to explain to people how we’re feeling (especially when the brain fog rolls in). Trying to concentrate and speak at these times is frustrating. I know I don’t find the words as quickly and I hear myself rambling or stopping mid-sentence to try to finish my thought.

My friends and family want to help me, but this condition isn’t really within the realm of anything they’ve experienced. (It wasn’t in my experience either before I got it.) It’s human nature to try to understand other people through your own history of experiences. That’s why I often get advice for sea-sickness pills, balance bands, herbal treatments and more. That’s okay. As it’s difficult to find a doctor who knows and understands the condition, I can’t expect the people in my life to be subject matter experts. A simple, “Wow, that sucks. Is there anything I can do to help you?” is all I need.

Living with this condition has impacted all areas of my life, but I’m committed to not letting it rule my life. I walk, bike outside, work, go to shows and movies, and try to do most of the things I did before (it just requires a lot more effort). Despite my somewhat depressing list of hopes for the future, I am lucky. MdDS isn’t going to kill me and I have friends and family who love and support me.

For those of you struggling, seek out the support you need within the people you know, as well as the people you don’t. There’s a community who can help you through this journey. By reading about other people’s experiences through the Facebook group, I’ve learned so much about this condition and how it’s different for everyone.

Finally, to my fellow MdDS sufferers…

You are not losing your mind

What you feel is real

We understand

You are not alone

Sheryl

Living with MdDS was last modified: September 8th, 2017 by Sheryl Soffer

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50 comments

Jennifer, if you are not already a member, we recommend joining one of our Support Groups. Many members in both the Facebook and Yahoo support group have been to Mt. Sinai, and you can find very detailed reports about the intervention in the message archives.

TMS research is being conducted at the Laureate Institute for Brain Research (LIBR) and conclusive findings have not yet been reached. If you would like to join one of our Support Groups, you may connect with us at bit.ly/MdDS-Support. You will find some Spanish-speaking members in our Facebook Friends Group.

Awoody, are you a member of one of our Support Groups? Most members are from the US and UK, but we have members from 57 countries. Links to our two online groups can be found at the bottom of this page.

Awoody, I am on the waiting list to see Dr. Dai @ Mt. Sinai Med. Center in NY. $2500.00, no guarantees, 4 days of treatment plus hotel and food. Its a long shot but heres to hope! lots of luck to you! Regards, Cliff

Hello to all, I am as yet undiagnosed, but when you know, you know! I went on an 8 hour fireworks cruise, rode on a train sitting backwards, and went on the high-speed elevator at one world trade over July 4th , 2016. Its been 85 days of continual swaying, rocking, and bobbing. I find a sense of normalcy when driving a car or even riding a bike. Swimming also brings some relief ! I have contacted Dr. Dai, Yakushin, and Cohen from Mt. Sainai, and have filled out the patient intake forms. I am hoping for some relief. Thanks to all of you for the comfort that I am not alone, although I really wish we all felt ” normal”, and this blog never existed. Prayers to all, regards, Clifford

Clifford Sorry to hear about your MdDS. I agree, it sounds like a classic case. Good for you for getting to the experts right away. Alrhough dr cohen and dr dai were not able to eliminate my symptoms,i believed it helped, and its wonderful to be in the presence of experts that understand, and want to help. Get lots of sleep. Get VOR physical therapy. Even anti anxiety meds if you need them until you get in to see dr Dai. I had a 4 month wait period. Good luck to you. Nina

Hi Nina, Thanks for your encouragement, you are the first person on any forum to respond. I am very pleased to hear from another sufferer. Of course I am very sorry to hear about your situation. Hopefully you will be able to find some relief before long. At the very least I feel lucky to have moderate symptoms, I’m able to get through work each day, I have stumbled a few times but so far remained unscathed. Oddly, it will be good (in my opinion) to meet and talk to someone else in this mess, if only to validate this interruption in our lives! Oh well, thanks for listening. I plan on updates as my treatment moves forward. Here’s to normalcy! Regards, Clifford.

Clifford, It definitely sounds like MdDS. I have all the same “normal” activities — driving, riding my bike and swimming. I recently went to NY for the treatment. I’m feeling a little better in the weeks since and hoping I’ll continue to improve (they send you home with settings for at home treatments). Since writing the original blog post, my concentration has improved, but then I started getting the severe gravitational pull forward. I still have some rocking and gravitational pull, but it’s been a little easier to tune out. I would encourage you to join the Facebook group (even if you start a FB account just for this). There are over 1,900 members and tons of information you can search to learn more about what people have tried (including the NY treatment). You are definitely not alone in this. Best of luck to you. Sheryl

Hi Sheryl, Thanks for taking the time to respond, of late I have been feeling the gravitational pull forwards too, almost like going over the big hill on a roller coaster. I am pleased that you have some relief and you have learned some techniques to manage your symptoms better. I must say that after a really good nights sleep, my symptoms are relieved for a couple hours. It feels so good to be “normal”, It keeps alive the hope that it may all be better someday. I will join Facebook this week, thanks for the advice and best of health to you. Regards, Clifford

Thanks a lot for writing this. I cried like a baby reading each line and nodding a yes to all these feelings. Been almost 4 years without a second of remission. I wish the world could understand just how difficult it is! May God give us rockers the strength to keep fighting through this until they find a cure…

Ritika, thank you for your kind words. I’m so sorry that you’ve gone so long without any relief. It really does make everyday things challenging. I hope a remission is coming soon for you (and all of us).

Having had MdDS for 13 years, you try a lot of different ways to feel better, or normal again. I have found the one place besides a moving car that I can feel the most normal is in the water. Walking and doing water aerobics allows my muscles to relax a little and my whole body doesn’t have to be on guard about maintaining balance and not falling. It is true that when I get out of the pool after 1 or 2 hours it is harder to feel balanced but that is just readjusting to the rocking and swaying again. I love the time in the water.

Hi Nancy… I just read your comments and I’m happy to see that you do find relief in the water and you’re able to do water exercises. I was recommended to do water exercises for my fibromyalgia that I have along with the MdDs but I’m afraid to get in the pool without assistance for fear of becoming unsteady getting in and out of the pool. Do you have assistantance in going in and out of the pool or are you able to do it alone? Do you use any type of assistive device for walking such as a walker or cane or wheelchair? Thanks for any comments you can offer. Keep staying fit as this disorder can disable your strength quickly by not moving or exercising!

Hi Jean I am able to get in and out of the pool without assistance. We have stairs with handrails on both sides. We also have a chair that can lower you down and take you out if necessary. Maybe you can find a pool with those assistance. I teach a water walking class for people with arthritis and other physical disabilities. Many people come with walkers and canes but once they get into the water they move so much better. You don’t have to worry so much about falling and the water makes you able to move easier. I hope you can find some relief for you in the water.

Jean, I don’t know what services you have in your area, but I would do some online research if you can. I actually just toured a facility in my town (to write an article for work). I was amazed at the fitness programs they offer, including pools equipped for those with disabilities or mobility issues. There may be something like this in your city. I would also look for to see if there are any programs that can provide transportation for you as well. Thanks for your encouragement. Thinking of you.

Nancy, I’ve found the same thing with being in the water. The movement of the water feels normal. The water aerobics is a good idea! I also feel a little more unbalanced after the pool, but it goes back to the regular rocking levels after an hour or so. It is nice to move without feeling like you are going to fall. That’s something we all took for granted before MdDS. Sorry you’ve been suffering for so long — glad you’re finding some good ways to cope.

Hi sheryl…reading your comments about being in the water helping with your mdds symptoms. Do you get in and out of the pool by yourself or do you have assistance? I would love to try water therapy but I’m afraid of trying to get in the pool and out of the pool by myself for fear of falling and being off balance. I’ve had this disorder for 15 years and I am totally homebound with it so anything that could offer me some sort of exercise would be really great for me. I just don’t have anybody that’s willing to come into the pool with me and I’m insecure doing it on my own. As I use assisted devices for walking, it would be almost impossible for me without someone who can help. Jean

I also cried as I read every line, saying that is me, I pray every day all day for this to pass. I have had it for 14 years, I go to the gym 3 days a week for an hour.that is the best I can do. I use to play golf allot can no longer do that, so I just try and stay busy. The only relief I get is lying down or in a car. Try and stay positive , say the serenity every time it gets sooo bad. My love to you Arlene

Arlene, thank you so much. Lying down is actually the worst for me. I feel like I’m being rolled off the couch or out of bed. It’s odd how that is different for some of us. Keeping busy is good advice. I can sometimes tune it out then or at least keep it in the background. Great job on getting to the gym! Hugs to you and we’ll keep focusing on the positive.

Thanks for sharing this, and all your comments. I have just finished two years with this following an a cruise. Had been under a lot of stress prior to then with my job and a couple other things, and chose to go on a cruise to “destress.” Ha. I am gradually getting better but being tired, stressed or change in weather (storms) seems to affect my condition with worsening of symptoms.

A couple of things that were not on the list that were huge for me were the electrical shocks I used to get going up and down my spine, along with the rumblings as I call them. If you have ever had a pedicure and sat in a chair that massaged your back with the “clapping” up and down ….well, I had the same. I would lay in bed a night (at that time it felt like a water bed) and would experience these up and down poundings on my spine….. Also, the shocks. For example, one time I was taking a shower and when the water hit my back, a feeling of an electrical shock it me and literally threw me across the floor.

I still have some small shakes of my legs that I feel, but are not visible of my legs that occur when I tire, but go away when I lay down for a while.

Have talked to my neurologist about all of this….there are no answers.

You are right about lighting, or even being close to electrical sources such as power lines. It used to be that when I walked into a big box store I felt forces like a huge magnet pushing against me and walking down the aisle took al my effort….thank goodness that seems to have gone away.

I remember taking my sandwich or whatever I could into the car and driving slowly through the neighborhood so I could eat without nausea as the table would be moving up and down so badly.

Went to see Dr. Dai in NY at Mount Sinai and he did help with the rocking and swaying, but I still have bouncing…heard he had developed something new that is helpful with that, and may go back to NY and give that a try.

This is a dreadful syndrome, and one that I had never heard of prior to getting it….but there are others….I know of at least six others in my town that have and a support group has been put together.

Keep calm, keep as active as you can, and get plenty of rest. Take your benzos as needed, but try to wean to the lowest dose. Eat healthy, and take magnesium and vitamin B12 supplements if OK with your physician. Most days I have now are pretty tolerable, but every once in a while I get a bad day with a set back….but, I try to not let it get me down as I keep telling myself that tomorrow is going to be better….and it usually is.

Jami- Thanks for your response. I haven’t felt anything like the electrical shocks you describe. That has to feel pretty awful! Thanks for the advice on the vitamins, and I definitely need to get more rest (and not be so disturbed by the rocking to sleep). Sometimes I feel like it’s going to rock me right out of bed! I’m glad to hear you got some relief by seeing Dr. Dai. I’m looking into going there as well. If I could control the rocking and swaying, I would be thrilled! I’ve been having to do some shopping lately to get my son ready for college, and the big stores are just too much. I have never been in and out of stores so quickly. Amazon is the answer! I was also very stressed before the cruise. “Best vacation ever,” I declared (until I walked into an airport bathroom stall a few hours later and everything started rocking), Now I call my MdDS the worst souvenir ever! Glad you are having mostly good days! Thank you for your support. Sheryl

Jami… I too and thinking about going to Mount Sinai in New York to see Dr. Dai. Can you tell me what exactly he did in his treatment with you to help you with the rocking and swing motion? How long were you there and how many treatments did you have before you felt any Improvement? Since going to New York is going to be such a big deal for me I just want to make sure that he’s going to offer some help before I go there…but everyone is different so I don’t expect he treats each patient the same. Any information you can give me I would really appreciate it since I’m looking to go there soon. I just need to find someone to travel with me to New York from Florida. Thanks Be well.

Jean, if you are not already a member, we recommend joining one of our Support Groups, where you can use the search feature to see what’s been discussed in regard to the intervention at Mt. Sinai. Members in both the Facebook and Yahoo support group have been to Mt. Sinai, and you can find very detailed descriptions in the message archives. You must be on a computer (or use a browser like Safari on a tablet or phone) for the search function to work properly.

I tried joining your support group on your mdds foundation website. I filled out the form along with a message stating why I think I have this disorder and I received an email back from Yahoo support groups with a link to click on to join. But the link does not allow me to go there.. the page states that the page is not found!? I tried emailing Yahoo but the email came back as undeliverable! What can I do to join your Support Group..can you help ?

Jean, the errors are a result of a conflict between Yahoo and Google. While you can use a gmail email address to join a Yahoo Group, to avoid the errors you reported you must enable SMTP-authentication within your email client or email service. We cannot offer any advice on how to do that as there are too many variables. If you have a Yahoo email address, it would be best to submit another request to join using it instead.

Nina in San Diego

9.21.2016 6:05 pm

Jami – your comments about MdDs really rang true for me. I was wondering why I would feel rocking and a magnetic force pulling me to the ground whenever I was in a department store. It never occurred to me that it was florescent lighting , but that makes sense. That is great that the magnetic force has gone away for you. In there anything you did to help that? Its really stormy and rainy out today, and I do feel worse, So, its interesting that weather makes a difference. I also went to see Dr. Dai in NY at Mount Sinai but the treatments did nothing for me. In fact, I was worse for a week or so. I’m now back to my base line. I’ve had this malady for 1 year now. I’m better than I was at the beginning, but only because of the anti anxiety meds. I’ve learned to walk, bike, do yoga and go to work, but it does take more effort than before. I have never met another person that has it. I hope to find a support group like you did. How did you go about that? Nina

Arlene- Sorry to hear you are struggling so much, especially for so long. I hope you get some relief soon. You’ve definitely earned it. Keep trying to do the things you enjoy (as much as you can). I’ll be thinking of you. Sheryl

Mine started after a month long cruise, my ears blew on takeoff from Austrilia, I haven’t had a sober step since 2003, Drs cannot help. I just am having so much trouble trying to stay positive. Dr. Just give anti depression pills. What is a syndrome? I am trying I really am. Please give me hope!

There is always hope. Sometimes we just need someone to help us find it. Have you joined one of our Support Groups? We have two online groups where you will find many caring people that understand the struggle, and that can suggest coping strategies for you.

Please look at Norman Doidges books and on abc radio he speaks of a PoNs device being trialled in USA. In 2017 it may make it here! There is hope but my greatest hope is that soon Jehovah God will do as he promised in revelation – he wipe out every tear and this life as we know it will soon change into a paradise.

Thank- you So much, Sheryl!! Tonight, especially, I really needed to read this, following another very frustrating doctors appointment! Every time I hear myself explain my symptoms to her, ( my Doc) I feel a bit crazy…….possibly because of the expression on her face, or because I know she really doesn’t get it. Reading your account of living with MdDs, is amazing, because It is as if I wrote it! I share your list except I am fortunate (for the majority of time) to get relief when I lie down.

Sheila- Thank you for your kind words. The doctors looking at you like you are making this up is the worst! I had one ENT tell me that I just needed some antihistamines. Ugh! I’m so glad that you get relief when you lie down. It seems like it’s always a little different for each of us. My only relief is bike riding (the bumpier the path the better), and driving or riding in a car. Take care, Sheryl

Sheila…I have the same reactions from my doctors when they see me rocking and reeling as I stand in their office trying to explain how I feel by saying I’m dizzy. Since dizzy can mean many different things I think it’s the wrong terminology to use when we tell our doctors why we are there to see them. Most doctors associate the term dizziness with a spinning sensation but I don’t know how many with M DDS on this website has any type of spinning vertigo, as I do not experience this type of dizziness. But when I stand up and they see me rocking back and forth sometimes in a circular motion they look at me like I’m crazy and they really don’t know how to respond to this motion! I think from now on I’m going to tell the doctors that I have a motion disorder that creates swaying back and forth within my brain and within my body that I cannot stop. A feeling of swimming with in my brain and a rocking back and forth within my body that’s exasperated by certain activities such as riding in a car, which is the worst for me, and many others that most all of you know about. I just wish that Mal debarquement syndrome was more studied in the practice of Neurology. Interns specializing in neurology should have this as one of the neurological diseases to study along with all the others! Sadly, not many neurologists have even heard of Mal debarquement syndrome and the few that have really know very little information to give to patients for treatment. They don’t even research it if you ask them about this disorder, you have to do it on your own and find out as much information as you can to try to help yourself because most of the doctors in today’s medicine will not do it for you! That’s why the MdDs foundation and this website blog is very important and helpful for us who are suffering with this disorder and I thank the foundation for posting all of this on the web. I just wonder how many of you on this website blog have gotten successful treatment just from information obtained here? It’s good to hear that I’m not alone with this disorder but so far I have not discovered a place to go for treatment that could actually help me with my daily struggles in overcoming this disorder from the MdDs foundation! If anyone has, PLEASE LET ME KNOW! THANKS.

Hi Sheryl… thanks for posting your comments on what you’re going through with M DDS and what you’re hoping your life will look like once they find a cure for this devastating illness. It’s so uplifting to hear other people’s stories because I feel like I’m not alone in this struggle with M DDS. My Hope list is almost identical to yours…as I have 99% of the same symptoms that you have in your list. I know everyone’s illness is unique and there are some things some people are going through that others aren’t and the degrees of this illness are worse than others, but I would say mine is severe to very severe. I have had this motion disorder for 16 years on a daily basis and with the grace of God I am surviving BARELY! It has totally disabled me and I am homebound with a live-in caregiver on a daily basis for the last 8 years. You seem to be able to function more than I because you are more socially active and you are working. I can barely make it to my doctor’s appointment without having to come home and lay in bed for a couple of days afterwards. I recently heard from a doctor that they are doing electrical brain stimulation st a Brain Center in a Midwestern State…it might be Omaha.. with success. If anyone on this Blog has heard anything about this treatment for mdds I would like to hear your comments… that would be greatly appreciated. I will keep posting my comments on the blog here and hope to hear from others and some success stories as far as treatment is concerned since we all know what the symptoms are we now have to find a cure for this terrible devastating illness. Blessings! Jean

Jean, you may be thinking of the research being conducted at the Laureate Institute for Brain Research (LIBR) in Tulsa, Oklahoma. More information is on the Foundation website. Research News is posted at the bottom of the home page.

Unfortunately, we are a long way from being able to classify either rTMS or tDCS as “treatment.” They are simply research protocols at this stage. Research takes place in phases, with parameters defined by both goals and funding. Additional funding is required for the research at LIBR.

The Foundation maintains a close relationship with its researchers and shares research updates with our community as they become available. The most recent paper published in connection with the research at LIBR can be found on our website in the Biomedical Literature area. PLEASE NOTE: these are peer reviewed articles. This type of paper usually is released so that only those with subscriptions to the journal can read the full article. Layfolk may read only the abstract unless the embargo is lifted. The article you are looking for (still embargoed) is titled, “Randomized Single Blind Sham Controlled Trial of Adjunctive Home-Based tDCS after rTMS for Mal De Debarquement Syndrome: Safety, Efficacy, and Participant Satisfaction Assessment.” Your public library may be able to get the full article for you.

Jean- I’m sorry to hear that you have been struggling with this for so long. I really feel for you and hope that you have some better days in the future. It definitely helps to know that we are not alone in this, and I think continuing to share our experiences will help others and raise awareness. I hope we continue to see more research and a cure for all of us. Sheryl

I have lived with this well described disability for 22 years now with not one day “off the boat” except when I repeated my cruise. Your description is so accurate in my experience and I too have simply made adjustment after adjustment to maintain my busy lifestyle. I no longer at age 80 look for “cures” but hope for nothing worse.

Sue- I’m glad to hear you are staying busy and finding ways to cope, especially after 22 years. As much as we struggle now with finding treatments (or even doctors to believe us), you must have really battled to be understood. Thanks for sharing. You are an inspiration to all of us! Sheryl